Fighting to find a cure
Alexandra is a 37-year-old mother, wife, daughter and pediatrician. She and her family had worked extremely hard to reach their goals, and had made a successful and happy life that seemed to be only beginning after years of training. On April 26th, 2019, Alexandra was diagnosed with a brain tumor after she noticed some strange sensory changes in her left arm. At that moment— everything changed. There was a flurry of “fight or flight”— having a biopsy, getting a diagnosis, and planning her resection. Her tumor was found to be an Anaplastic (WHO grade III) Oligodendroglioma, or “Oligo” for short. Oligos are one of the most rare types of brain cancer. Only about 20,000 people in America have this diagnosis (which includes those with lower grade Oligos). Because they are so rare, there has been hardly any research geared to this type of brain cancer, and the treatment and patient outcomes have not changed much since the 1990s. Oligo is currently an incurable cancer, but it doesn’t have to be. With more research geared to this specific disease, a cure is within reach.
As Alexandra recovered from her surgery she planted her feet back on the ground, but now in a new direction. She is motivated, dedicated and inspired to work tirelessly to increase oligo research funding. She is so hopeful that within the next few years science will come to the rescue — but for that to happen, there HAS to be funding for needed research. Alexandra has partnered with a non-profit dedicated to this exact cause, called Oligo Nation. Oligo Nation has been dedicated to increasing research on this disease over the past 10 years, and continues to drive this small and specific field forward. This honor fund will support Alexandra’s goal to find a cure by supporting Oligo Nation as they work with the brain cancer centers around the country. Thank you so much for considering this Honor Fund.
What your Donation Supports
Because Oligodendroglioma is such a rare disease it is hard to study: the dearth of data, along with lack of pre-clinical tools such as cell lines and mouse models, make it very difficult to perform meaningful research, and as a result, most researchers don’t even consider working on our disease.
The development of novel cancer therapeutics follows a well-established process:
1. Interrogating genomic and other data to identify new pathways driving cancer growth and survival
2. Translational preclinical studies validating the potential of targeting these pathways
3. Lengthy, resource-intensive clinical trials in patients, testing the efficacy of these novel treatments.
At the urging of the brain cancer research community, Oligo Nation has set the goal of creating a complete library of tumor tissue, cell lines, mouse models and data resources to spur comprehensive research efforts across the country. We are working with leading institutions and researchers, along with the National Cancer Institute, to develop these resources. Your donation will go directly to this goal.
Update on Oligo Nation Biobank
In 2019, the Oligo Nation biobank was launched. As of year-end, we have 61 tissue samples and they were sent out for whole genome and RNA sequencing with data expected back in Q1 ’20. We are also working with the National Cancer Institute to include these samples or a subset in other cutting-edge analysis programs (proteomics and metabolomics). We have also begun collecting tumor tissue directly from surgery for use in developing preclinical testing models.
We anticipate having at least 100 tissue samples added to the biobank in the coming year with robust data sets becoming available to the research community throughout the year.